Mast Cell Activation Syndrome: A Mysterious Disease Often Missed, Here Are Solutions

Despite its prevalence, MCAS remains widely undiagnosed and misdiagnosed, often taking a staggering 10 to 20 years for accurate identification.
Mast Cell Activation Syndrome: A Mysterious Disease Often Missed, Here Are Solutions
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Terri Ward
12/23/2023
Updated:
2/5/2024
0:00

If you experience itching, hives, brain fog, and fatigue without being able to identify the cause, it may be linked to mast cell activation syndrome. Mast cell activation syndrome (MCAS) is an immune cell overreaction that appears to be on the rise. It causes inflammation and other distressing symptoms.

Before the COVID-19 pandemic, MCAS affected 17 percent of the general population. Some specialists believe that post-COVID, MCAS may affect up to 25 percent of the general population, with an even higher increase observed among those with chronic health conditions.
But despite its prevalence, MCAS remains widely undiagnosed and misdiagnosed, often taking a staggering 10 to 20 years for accurate identification.

Obstacles to Diagnosing MCAS

Dr. Jill Carnahan, who practices functional medicine in Louisville, Colorado, highlighted a significant gap in medical education. Most doctors learn about a rare mast cell disease known as mastocytosis, but they aren’t made aware of MCAS.

Dr. Neil Nathan, a recognized authority in Lyme disease and MCAS and author of “The Sensitive Patient’s Healing Guide,” told The Epoch Times that he hadn’t heard of MCAS until 2016.

“Once it entered my awareness, I began to realize I had been seeing it for years without making the right diagnosis,” he said.

While many doctors in integrative and functional medicine understand and effectively treat MCAS, experts disagree about how to diagnose it.

Recognizing MCAS Symptoms

Because mast cells are present in every system, symptoms can develop almost anywhere, making MCAS challenging to recognize. Symptoms can also overlap with other conditions and vary widely among individuals.

Histamine-related symptoms such as itching, hives, palpitations, brain fog, fatigue, abdominal cramps, and bloating are a tip-off for MCAS, especially when the reaction is instantaneous and perhaps inconsistent, Dr. Nathan told The Epoch Times. Unlike allergic reactions, which typically occur consistently with each exposure and take a few minutes for symptoms to appear, mast cell reactions hinge on the activation status of the mast cells.

“With mast cell activation, it depends on how reactive those mast cells are at the moment,” he said.

This means that the cells may not react if a patient is not in a flare-up. Importantly, if you can stop the activation, you can prevent subsequent reactions.

Other symptoms of MCAS include the following:
  • Irritated eyes, nose, mouth, or throat.
  • Headaches, neuropathies, and cognitive issues.
  • Anxiety and mood disorders.
  • Bone, joint, and muscle pain.
  • Joint laxity or hypermobility.
  • Sensitivities to chemicals and electromagnetic fields (EMFs).
Early identification is vital to prevent the continuous release of inflammatory chemicals from activated mast cells, which can lead to severe consequences and contribute to chronic health conditions.

2 Patients, 2 Distinctive Journeys

The stories of Summer Carroll and Hannah Parker, whose lives have been profoundly shaped by MCAS, provide insight into the importance of early treatment and the challenges faced when practitioners lack awareness about MCAS.

Mrs. Carroll, a mother and formerly active youth pastor, has battled MCAS for a decade since experiencing an anaphylactic reaction following surgery. Her symptoms evolved from joint pain to seizures and an inability to tolerate most foods. Documenting her extraordinary journey in her book “Canary in a Bubble” (published under her pen name, Summer Le’Dawn), she describes living in a “protective bubble” to avoid reactions to everyday elements such as perfumes.

Throughout her ordeal, she faced misdiagnoses, dismissals, and gaslighting from the medical community. Over six years, she underwent numerous tests without an explanation for her extreme hypersensitivity. One doctor dismissed her symptoms as anxiety, prescribing medication for a condition she did not have.

Once she was diagnosed with two tick-borne conditions—Rocky Mountain spotted fever and alpha-gal syndrome—Mrs. Carroll faced skepticism from an infectious disease specialist. The U.S. Centers for Disease Control and Prevention (CDC) contacted her, referring her to a specialist at the infectious disease clinic in her state’s largest teaching hospital. However, he denied the presence of Rocky Mountain spotted fever in Alabama or any states Mrs. Carroll had visited.

Despite eliminating red meat, milk, and mammalian byproducts due to alpha-gal allergies, her prescribed medication contained mammalian byproducts, exacerbating her condition. As her dietary restrictions tightened, she could only tolerate organic tomatoes, flour, and well water. Weighing a mere 85 pounds, Mrs. Carroll suffered extreme malnutrition and relied on an electric wheelchair to get around.

The surgeon, scheduled to insert a vital nutrition port, doubted her condition and refused to perform the procedure. She shared, “It was Christmas, and they sent me home to die!”

Mrs. Carroll’s story highlights the serious consequences of delayed diagnoses and the lack of understanding about conditions like MCAS. She found help through an online support group that led to her MCAS diagnosis and medical cannabis that calmed her system down. With her nutritionist’s guidance, she gained 25 pounds and could walk again. She credits her perseverance, faith, and the proper medical support for bringing her back from the brink of death.
Six years ago, Mrs. Parker, a physical therapy assistant, faced hormonal imbalances, joint pain, and sleep disturbances. Seeking help from a naturopathic physician specializing in MCAS and Lyme disease, her lab results revealed Lyme, Bartonella, high estrogen, and low progesterone, affecting mast cell behavior. She believes that poor sleep, a lack of exercise, and stress from a demanding job “tipped it over the edge.”

Fortunately, her doctor identified and halted the mast cell activation, treated the Lyme disease, and rebalanced her hormones. Her improvement contrasts sharply with Mrs. Carroll’s worsening situation, emphasizing the need for early intervention and specialized MCAS care to prevent irreversible damage.

While their paths differed, both stories offer hope and underscore the urgent need for increased awareness among health care providers.

A Multilayered, Collaborative Treatment Approach

Treating MCAS requires a multilayered, personalized, and collaborative approach, according to Drs. Carnahan and Nathan. Navigating potential reactions to medications or supplements demands a step-by-step strategy, starting with one element at a time, using low doses and working up, and possibly using a compounding pharmacy that creates custom drugs to avoid reactions to inactive ingredients. Dr. Nathan emphasized the importance of resetting the limbic and nervous systems as part of treatment.
Healthy lifestyle changes can also make a difference. Mrs. Carroll created a safe bubble, moving to the middle of 60 acres to avoid having to leave home when her neighbors sprayed their crops. Mrs. Parker found a less stressful job working fewer hours. In navigating the complexities of MCAS treatment, a critical step for patients is reducing or eliminating triggers.

Triggers, Toxins, and Resilience

Like symptoms, the triggers vary among individuals. Mrs. Carroll and Mrs. Parker both had underlying tick-borne infections. But additional triggers—surgery for Mrs. Carroll and prolonged stress and lifestyle factors for Mrs. Parker—ultimately set off MCAS for them.

Dr. Nathan, who is also an expert in mold toxicity, considers those with MCAS “the canaries in the coal mine,” warning us about the toxicity of our planet.

Various potential triggers may include:
  • Mold, chemical, or heavy metal exposure.
  • Infections, especially Lyme disease, Bartonella, and COVID-19.
  • Herbicides and pesticides, including glyphosate.
  • Parabens, phthalates, and per- and polyfluoroalkyls (PFAs).
  • Food, beverages, and food additives.
  • EMFs.
  • Trauma and chronic stressors.
  • Medications and supplements.
Our bodies are designed to adapt and detoxify, but there is a limit to our resilience, and it is different for everyone. Since we cannot predict when our resilience has reached capacity, minimizing toxic exposures to reduce our body burden is the best defense. Even prior to diagnosis, patients can take immediate steps to identify and reduce triggers.

Clean Air, Clean Water, and Clean Food

Dr. Carnahan emphasizes the need for “clean air, clean water, and clean food” to reduce one’s toxic load and improve overall health.

For clean air, air purifiers, open windows for ventilation, and a HEPA filter in your furnace can improve indoor air quality. Avoiding smoke, choosing nontoxic cleaning products and scheduling regular house cleanings to minimize airborne particles help create a healthier breathing environment.

For clean water, using a reliable water filter eliminates contaminants, and checking local water quality reports guides effective filtration. Using stainless steel or glass water bottles avoids potential plastic leaching.

A clean food approach prioritizes organic, whole foods and avoids highly processed items with additives. Using stainless steel or cast-iron cookware prevents potential contaminants from leaching into meals. An anti-inflammatory diet can help reduce inflammation.

The Importance of Continuing Education

The increasing prevalence of MCAS demands recognition in medical education. Continuing education could equip providers to discern patterns of symptoms, even in the absence of conclusive tests. By embracing a holistic approach to MCAS diagnosis and treatment, listening to patients, and validating their experiences, providers can ensure timely diagnosis and treatment, ultimately improving patients’ quality of life.
Terri Ward, MS, is a functional nutritional therapy practitioner and certified gluten practitioner, holding a master's degree in human nutrition and functional medicine. Specializing in helping people with food sensitivities, autoimmunity, and other gut-related issues, she helps them reduce inflammation and heal their guts to reclaim energy and vitality and reboot the immune system. Terri has authored cookbooks on the alkaline diet and diverticulitis.
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